Sews2Reap

A few days ago my son, along with many of his friends in our church youth group, volunteered at a retirement center. The center was having a grand holiday party with a beautiful buffet, family visiting, horse drawn carriage rides, and photos with Santa. The youth volunteers all got costumes of some kind and little jobs. Some were elves greeting, working at the carriage ride, or helping Mr. and Mrs. Clause, there was a tall snowman, and a handful were going to be a lovely live nativity at the entrance.  My son was given shepherd robes, a giant candy cane that had been wrapped in brown paper to make it a crook, a few directions, and a chair covered in burlap on a bed of hay.  These were the directions, "sit still and adore Jesus." :) It made me laugh!   Of course as soon as we left the house to do this little chore he got a horrible headache  in the car , so I gave him all his essential oils, over the counter meds and (don...

We have been on a journey to wellness for some years now. It isn't  a quick fix but a lifetime of effort!  These are supplements we use nearly every day in our house.                   Supplements used by the Headache Kid : When my son had a serious reaction to his pain medication ( the first one that actually helped ) we decided to all we could naturally to improve his life. I have written in the past about changing our family diet and seeing great improvement. This is part 2 of that effort. The first thing we did was add MSM. I already had Sulfurzyme which had been beneficial for my own health. He takes one capsule 3 times a day. Some days he takes more if he is really struggling with inflammation.  I had read so many articles about omega 3 and brain health. Then found out boys often need more omega 3 as well. It has to do with testosterone not being a fat carrier and estrogen is.  Here is one...

It has been over two months since we went from healthy eaters to that fanatical family.  My son had a bad reaction to the one medication that had really helped with his pain. We had to stop it cold and the pain came rushing in.  As usually happens, desperation helped us make a decision we had been putting off. For us it was the gluten/grain free diet. So in one weekend we dropped all sugar, and most grains including corn.  The one we kept was rice. I know. You're thinking why? Well, it is one of the only foods my son had complete tolerance for.  I told him I would do it with him. It was only fair. I used to be such a slave to bread. We have been cutting it back for years so it was pretty painless to just cut the cord. Sort of. Not everyone in our house was willing to keep the diet with us. So meal times could be more stressful. It seemed to reinforce the few foods he couldn't have instead of the all the great choices he could have....

My son is going to his first sleep over in over a year.  Since his pain has grown and become unpredictable and his nights have been some of his worst times, sleepovers have been impossible.  I am excited, and so is he, for this simple childhood event to be back in his life! This is a trial run.  He will only be a few miles away and with people we trust completely.  It's not so simple though.  Not only do we pack his clothes but also his medications.  Each dose in its own baggie with instructions.   This is just to get him through the night.  So here is the biggest challenge for me.  It isn't letting him go - I so want him to have every "normal" good childhood experience he can.  It is trying not to overwhelm the family in whose care he will be. Not sending pages of detailed instructions with a timeline and explanations for each medication.  I know they will call if there is any question about anything.  I keep telling m...

When diagnosed with a syndrome, you quickly learn it a a big umbrella with lots of conditions under it. This is how it looks for my son.  We have found excellent care, and a good mix of prescriptions and essential oils to keep him happy and healthy.  He has more issues on the inside where they can't be seen. His external scars are minimal compared to what is going on inside physically. Currently, our favorite essential oil is Cedarwood . It helps him with pain, mood, and sleep. We often combine it with Vetiver , especially during school, when he has trouble concentrating through the pain. Another oil we use daily is Clove . It helps with the neuralgia electric shock pain because of its wonderful natural numbing effect. Parry Romberg kids are some of the toughest you will meet!  They have known chronic pain way too early in life. 

I will praise Him in the storm. The storm front is on my door step lately.  Our house is peaceful, full of love, and kindness and true safe place in this crazy world. But the storm still rages.   Unfortunately, when the weather changes, like a cold front moving through, my son's headaches are barely manageable.  Fall is on the way, we have had a few weather fronts move through and the pain level for my kiddo has been high and difficult.  We had been enjoying a day or two at a time of almost no pain, but now we are thankful for an hour or two with manageable pain.  I know the pain storm will pass, but it is hard to listen to it rage not know how long or intense it will be.  One thing we do is list things we are thankful for, a way to distract from the pain and feel hope in our hearts.  A hard Eucharisteo as Ann Voscamp, author of "1000 Gifts" calls it. My son will list his friends, toys, comic books, puppy, and so on.  Things that give him ...